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Hope

10/22/2010

Do you remember when TV ended at a certain time and signed off for the night? When at 1 or 2 am all channels played our National Anthem and then went to fuzz –nothing but gray static or test patterns nonstop until the next morning?

Thinking back, it was kind of nice to have that sign off - to know that when you were sleeping, so was your TV. It was like a universal downtime.

Now TV is 24/7, non-stop, something, everything, is always on anytime day or night. There is no downtime. Life runs on as we sleep - we wake up waiting to see what we missed. Sometimes I think this 24 hr TV world is very much like living with a chronic illness.

A chronic illness has no downtime. Even when not in an active flare-up, it never goes away. It doesn’t take a break. No stirring sign off of Air Force jets flying over the Rocky Mountains to strains of patriotic music in the wee hours of the morning. No few-hours break from the background noise of chronic illness.

The continuous background buzz of IBD can be so wearing. How amazing would it be to turn it off not just for a few hours but forever? That’s the promise and hope in research like the Biome Genome Project. Here’s hoping for a permanent sign-off to IBD in our near future.

09/15/2010

I shop at our neighborhood Whole Foods Market probably once a week. Every so often, I bump into part-time employee/full time student Will.

Will is very tall (I am not) and has reached many a high shelf for me over the last couple of years. He is invariably pleasant and very helpful. We’ve chatted about all sorts of things – the best frozen raviolis, if Greek yogurt should come in 0% fat, dogs treats for training. Will is knowledgeable, intuitive and is always up for an adventure like the time we went on a storewide hunt for Moroccan curry paste.

So why am I telling you about Will? Thing is, I found out something the other day that took me quite by surprise – Will has Crohn’s disease. He was diagnosed at 14 years old. He suffers from flare-ups and stomach pain, stays away from nuts and popcorn, manages his IBD with a cocktail of medications, has tired days and not so tired ones.

Why, I wondered, was I surprised? Do I unconsciously think that children with this disease can’t grow up to be intelligent, thoughtful, engaging, productive adults? I admit that, thinking about the myriad of struggles children with IBD face, I do wonder how a child with IBD can come to live a full life alongside their disease. But time and again, I have been amazed by the courage and determination shown by children living with this often very serious illness. They play sports, do well in school, volunteer, go on semesters abroad. Maybe having to face very serious realities well before their peers helps them to learn the life lesson that where there’s a will there’s a way. Thanks Will, for reminding me of the wonderful adults kids with IBD can grow to be.

09/14/2010

I was thinking this morning about the amazing anonymous gift that we received (and I blogged about) yesterday. I also thought about the relationship of money and of research. What did this donor purchase with their gift? What does our research offer in return for the monetary investment?

And what was it that motivated this person to be so very generous with their gift? Does this person have a loved one who is diagnosed with IBD? Love is a powerful motivator and the love of a child or grandchild probably one of the greatest motivators. In a situation like IBD, where money cannot pay to take away the pain and stress of an illness like Crohn's disease or ulcerative colitis - our donor chose to see the bigger picture.

He or she, by giving a gift of this size, invested in the future of their loved one. As with all investments, there are risks. But when faced by the often overwhelming lack of control that comes from watching a child suffer, this person, our angel donor, stepped up and took back some of what the diagnosis of IBD had taken. This person took back hope.

The generosity of this gift not only gives hope back to our donor but to everyone who lives with this insidious disease. Thank you, whoever you are, for choosing to believe in the power of this research, for choosing hope.